Friday, 30 November 2012

I am to get 12 cycles of chemo-- 2 weeks on, one week off, over the course of a year. I have 10 cycles to go. During this time, due to the Irinotecan, I will feel weak, nauseous, and have extreme abdominal cramping. I've already lost most of my hair, so 2013 will be a relatively hairless year. I get infused from 9am-12:30 daily, and am then left to my own devises, which usually means sleep and netflix. I want to find income of some sort & am (very tentatively) considering re-opening my etsy shop & sewing up some samples.

My bills from the epic one-week uninsured stay at Bellevue add up to over $6,000... I haven't looked at all of them, to be honest. You'd think for 6k I'd get better inpatient meals than a corn muffin and a saran wrapped piece of american cheese on a styrofoam plate, as I was served for breakfast one day:

If you'd like to help out with my egregious debt to the City of New York Public Health Services, please click the donate button to the right-- I need all the help I can get right now and I left my shame at the infusion room door.

I had to cut off my hair a few weeks ago & it was more emotional than I thought it would be-- presumably because I hadn't cut my hair since it started growing back in 2009. That hair represented 3 years of remission, now gone. I saved the braids, I'm not sure why. I labeled the bag "RIP Kaylin's remission, 2009-2012". It was a private affair, no camera or chemohawk, which would've felt cheap and exploitative to my tresses this time around. Something has changed. I'm no longer documenting my treatment with nervous excitement, I don't feel like making fun of everything cancer-related. I should change the name of my blog to "Cancer is Annoying as Fuck, Please Leave Me Alone (the cancer, not you)".

pre cut

back to bald

So here I am in purgatory again, the space between. I'm resigned now to the idea that my cancer is a chronic affliction, something I will have to deal with on and off until I die. I am a professional cancer patient. This is my fate. On my left hand my lifeline splits dramatically in half, with each end arching in different directions, away from each other . When I was a kid I wondered what this meant-- would I be in a car crash half way through my life? Would I almost die? The thought was terrifying. Now I know: it represents life before cancer, and with cancer.

Monday, 12 November 2012

I have been diagnosed with a recurrence of my original Ewing's Sarcoma from 2008. This time the tumor is growing from my right lung pleura and is completely taking up the right side of my chest, pushing on my heart. It's roughly the size and shape of a dinner plate, which is to say... it's HUGE. Over the past few weeks I've had a chest tube put in (thankfully out now) to drain 3 liters of fluid from my lung. I've started chemo, which seems milder so far than what I went through three years ago. Still, the side effects remain, especially weakness & vomiting, my dear old friends.

Right now I'm being treated at Sloan Kettering thanks to the hard work of my dedicated family, friends, and... Medicaid. I cannot express how magical SK is, especially Pediatrics, where I am being treated. It's like the Disneyland of cancer wards. I feel I'm in the best, most capable hands possible.

My next chemo is on the 19th, just in time for Thanksgiving & watching everyone around me eat delicious food while I desperately grasp the puke bucket. Each cycle will consist of 10 days Irenotecan and 5 days of some other drug I can't remember. I won't know of any progress (i.e., is it working?) until after my second cycle. This will go on for 12 months, with breaks for radiation and surgery. Yes, I get it all this time!

I promise to keep you all updated, but please keep in mind-- sometimes I don't even have the energy to write. There is an apathy that falls upon you after your 3rd cancer diagnosis. I saw it happen with friends, and now I understand. Why bother to write this time? Haven't we been here before? Why am I suffering through this again?